UCL

CRAE

Talking about Autism

Research summary:
Talking about Autism – Autistic Parents’ Views and Experiences of Talking about Autism with their Autistic Children

Thank you for taking part in our research last year. This research summary tells you what we did and what we found.

What was this research about?
In 2019, researchers at CRAE published a survey about how parents talk to their autistic children (under the age of 18 years) about their autism diagnosis. Some of the most insightful responses to this survey were from autistic parents of autistic children, so we launched a new study that specifically sought the views of autistic parents.

What did we find?
We collected 34 autistic parents’ views and experiences of talking about autism with their children (autistic and non-autistic). Results showed that most (94%) parents told their children about their diagnosis. Whilst most (87.5%) parents did not receive support in this regard, around half (53.1%) did not feel the need for this anyway. About two thirds (68.8%) of parents were satisfied with the way the diagnosis was disclosed to their children.

We also identified two key messages from our survey:
(1) The need to be open and honest about the diagnosis
Parents felt that children have the right to know about their diagnosis, emphasising that it is nothing to be ashamed of. Parents spoke about the importance of speaking freely, openly and honestly about autism, as early as possible. Whilst it was felt to be important to emphasise the positive aspects of autism, parents also noted that the negative aspects should not be ignored.

(2) The need for appropriate support
The diagnosis of autism was often framed negatively by the professionals involved in disclosing a diagnosis, and support was felt to be needed in this regard. The important role autistic adults can play as role models for autistic children was noted.

What happens next?
We hope that the knowledge and expertise that autistic parents provided in our research can be helpful for other parents (both autistic and non-autistic) as well as professionals working with autistic children and their parents.

Thank you again for taking part in our research – we really appreciate it!

Lok Man (Tiffany) Lui
(supervised by Dr Laura Crane and with input from Prof Liz Pellicano)

Find out more about our earlier work on this topic:

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